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Tuesday, 6 September 2011

Does she have Down's?

We have not had a lot of sleep recently from Miss Tiddler. I hate to moan about that, you see we were blessed from about week 2 of her life to very good sleep, interrupted only by us waking her to feed. It seems she shouldn't really have been this sleepy but we didn't realise this at the time.

Anyway, after a few particularly sleep deprived nights, I decided to take Tiddler to the GP yesterday as I know one of the reasons behind her being disturbed is constipation. Sorry Tiddler, yes I am discussing your bowel habits on the internet. I wanted to check out the medication she was already on. My surgery were great at squeezing her in to be seen same day, I think this is a common baby policy... However this meant that we saw a new Doctor, never seen before.

Medication all okayed, and a brief chat ref. Tiddler's diet - "Do you give her fruit and veg?" Errr... no shit Sherlock- I was at this point inwardly rolling my eyes but reminding myself that she probably does have to tell some people this...

I then asked whether her Hypotonia could be the reason she is plagued by constipation? She said that yes, in her opinion it could and that low muscle tone in the bowel could definitely occur in someone like Tiddler. She then looked at Tiddler who was wriggling all over me at this point and asked "Does she have Down's Syndrome?"

My world went funny, I went dizzy, I couldn't breathe, I burst into tears. Looking back, did she say that or did she say "She doesn't have Down's Syndrome...does she?" I don't think it matters. I couldn't believe she was asking me this. Why was she asking me this? I could not stop the tears. Dr realised at this point all was not rosy and changed her tack. "OOooo yes, things can be hard when you have a child with health problems..." I was steeling myself for the "Have you got much support?" question when I blurted out how insensitive her question had been, how it had been asked before, how did she think that question made a parent feel? And in any case why did she say that as Tiddler didnt look like she had Down's, did she???

To give her credit, she backed down fairly swiftly, explained she hadn't meant to be insensitive, said no Tiddler didn't "look" like she had Down's but that sometimes you can't tell visually in any case. I more or less held it together till I left the surgery, and then bawled my eyes out.

You see, when Tiddler was born and transferred to SCBU on Day 1 of her life, people started to comment on her appearance. They used the word "dysmorphic" a lot. She had a battery of chromosomal tests or "karyotyping". A midwife came to SCBU to do a post natal check on me. Chatted for a few minutes, walked round to look at Tiddler, look at me and then said "you had the nuchal test, didn't you?" The only conclusion I could draw from that question being that she too thought Tiddler looked different and possibly had Down's.

Also, for months we had been receiving hospital reports that duplicated the last known diagnoses/ issues in bold at the top. Imagine reading a report that drops on your mat telling you again that your baby has "dysmorphic features". Its a horrid, cruel term. I flagged this up in the end and it was agreed that it was no longer the case and so removed.

That is just like the insensitive GP yesterday. Sometimes, healthcare professionals forget what words and labels actually mean and what it feels like to hear them, if you are a Mummy. The GP yesterday, given that she didn't know us, could have asked me to run through Tiddler's history quickly, or to ask if we had a diagnosis etc. Surely her NHS patient database flags up any diseases / conditions that each patient suffers from? If she had read even one entry in Tiddler's notes she would probably have gleaned enough information. If Tiddler did have Down's - it was still an insensitive sledgehammer approach that would have caused upset.

So yes I am angry, it still hurts to think about it but I am very pleased I managed to challenge her. I wouldn't have been able to do that before.

4 comments:

Oh no :( what an appointment! As a mam to a child with "dysmorphic features" I know exactly what you mean. My son has had a list of " unusual characteristics" since he was born. My friend had an even worse comment on a hospital letter "deformed face" ! Are these "professionals" human???? My sons paed uses "not typical" whereas her collegues use "abnormal". big difference to me!

Oh hun tbf the symptoms and issues are the same as Kyds and he has DS... at least she was asking inquisitive questions, we have seen doctors that just blame me for being a young mum and not feeding him properly for his lazy bowel! I hate most GP's we've seen they are useless patronising idiots... grrrr What meds is she on?